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Gcmaf-reactions and side effects

Discussion in 'GcMAF' started by Samina, Jul 27, 2011.

  1. lobba123

    lobba123 Senior Member

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    you should use antinflammatories like reservatrol, curcumin and similar

    http://www.advanceliferesearch.com/

     
  2. Recovery Soon

    Recovery Soon Senior Member

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    This is very inspiring to read. Thank you for the words of wisdom.

    Hopefully, you will figure out the best dosing for you and continue to improve. You deserve it after the hell you've suffered through.
     
  3. CindyWillis

    CindyWillis Senior Member

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    I wouldn't asssume he is telling different stories to different patients as different ears tend to hear different things due to different questions and different terminology used. I am defining "cure" as being 100% well and no longer needing medicine anymore. I have asked for Dr. Enlander to log on to this website and discuss the success he has had with the higher doses of GCMAF in person. It would be great to hear it from the horse's mouth.


     
  4. Recovery Soon

    Recovery Soon Senior Member

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    That sounds about right.

    I would add "symptom-free," so that say someone drops a medication but still experiences periodic symptoms they did not suffer prior to the illness onset (say, PEM- for example) they are not cured.

    Even in lesser amounts, or less frequently- regardless of intensity of exertion- unlike people without CFS who never experience this symptom.
     
  5. Daffodil

    Daffodil Senior Member

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    thanks recovery soon:)

    sometimes i wonder if i am really suffereing that much more than most, or if i just whine a lot more lol
     
  6. Forebearance

    Forebearance Senior Member

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    Hey you guys,

    I've been having some luck with a supplement called AllerTame by Jarrow. It's got butterbur in it, specially treated to be non-poisonous. It seems to be a good anti-inflammatory.

    Forebearance
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Forebearance,

    Thanks! I have successfully used butterbur (also treated to be non-poisonous) for migraines--so maybe there is a similar mechanism.

    Sushi
     
  8. Recovery Soon

    Recovery Soon Senior Member

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    Hi All.

    2 weeks ago I took my first dose of GCMAF (.25) and had severe reactions which persisted for a little over a week (much worse the first half). The effects hit about 18 hours after the injection.

    Dr. Enlander suggested I take 2 weeks off which I did.

    Last night we agreed to try for a reduced dose (.10) - at over 24 hours there are some faint odd sensations- but nothing too worrisome.

    If things stay the same I think the next move will likely be 1.5 next Tuesday.

    I'll try to report back.
     
  9. lerae

    lerae

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    Just wanted to update, especially to help or receive information from people who have also been
    diagnosed with lyme disease.
    I had severe reactions from just .08-.10 ml's...took a few weeks off and tried it again. Insomnia, just an overall sense of dullness. My BP decreased, shortness of breath. the first reaction was terrible. My entire body went into a heightened staight of inflammation. I wanted to crawl out of it. Although it does not react like that anymore...it's not pleasant. I am also taking nexavir. And although I believe the fist week of
    that may have helped, now I do not see any progress. I am happy for everyone who is seeing even a small progress. I just hope the reactions are not causing any damage. the MD who
    said to order it, and that w/i 3 months, I would be so much better...well, he wasnot able to answer any questions regarding it's process. My new LLMD has no exerience. So, I think I need to stop until I am w/ a practitioner who has worked w/ his before. I have a minor in biology and was in the medical field, but we should all be under good care of physicians while taking it.
    An MD should not have you order it blindley.
    But again, I have been diagnosed CDC + for lyme, and although lyme MD's are using it...it seems like a consitent pattern of it not any extraordinary difference.

    I am supplementing vit D, as mine came back on the lower end. I just hope it isnt damaging to us patients w/ immune dysfunction.

    A friend of mine just passed from cancer...and looking back, there is a part of me that wished I would have given this to him. It could have been more beneficial? Not that it will not help me still. But, wasnt it made for cancer and HIV treatment particularly?
     
  10. Daffodil

    Daffodil Senior Member

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    Lerae.. I am very sorry to hear about your friend.

    which vitamin D is low? the 25 hydroxyvitamin D or the 1,25 dehydroxyvitamin D?

    thanks
    xoxo
     
  11. lerae

    lerae

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    25 hydroxy.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Lerae,

    Are you taking things to reduce inflammation? High inflammation before starting usually makes it much harder to tolerate. Also, I'd be cautious about supplement Vit D while taking GcMAF.--at least until you have a few tests of 25 & 1,25 to see what is happening with levels.

    Lyme patients do seem to have more trouble tolerating GcMAF--maybe because of inflammation? Don't know. But controlling inflammation is very important.

    Sushi
     
    garcia likes this.
  13. Daffodil

    Daffodil Senior Member

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    Lerae...you have to check the 1,25 dehydroxy vitamin D as well. that is usually high in CFS patients, while the other one is low. you shouldnt supplement, i dont think.
     
  14. lerae

    lerae

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    sushi- it is not inflammation that is the primary symptom anymore. Every CFS and Lyme patients cytokines are
    high anyway.
    My body just does not tolerate it well. My heart, BP, brain, my well being, nerves, insomnia,increased pain. Gcmaf works off of you vit d. after I supplemented again, the inflammation went down as a side affect. But, if your vit d is low, the other form is high, from my understanding. My LLMD (the previous one who told me to get on it even before testing nagalase)...made sure vit. d was @ optimal levels. I have no choice but to supplement it. Unless you want to do the Marshall protocol. and not take GcMaf. Anyways, its a daunting affect. I get frustrated in lieu of
    physicians telling you to take it w/o throwing any kind of caution to the wind. I want to have a good MD working w/ my body as an individual. I have an incredible LLMD/MD/internal medicine and Oriental Md (all in one)m but
    he is not familiar w/ this. No one tolerates it the same. The question I have...it is harming me in any way? Is it a reaction that comes, goes away and then you feel better? Or is this a sign my body should not be taking it?
    I feel like the only people who I could truly answer that question are the MD's who are studying it. or the initial Dr,. Y.
    .
     
  15. Forebearance

    Forebearance Senior Member

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    Hi Lerae,

    I would suggest that you try to find a small enough dose of GcMAF that it doesn't cause any more side effects than a mild fluish feeling for the first day or so. When the doses get small, it is hard to tell exactly how much you are taking, but squirt out a tiny drop and try taking it sublingually or putting it on your skin. That will make it less powerful. This is just a suggestion that has worked for me.

    Forget about what the standard dose is or what other people are taking. Find the dose that works for you, at this time. GcMAF can still be very beneficial even at tiny, tiny doses, if that is what your body needs. It may even be a good sign, indicating that you are going to respond strongly to GcMAF and that over time it could help you a lot.

    I understand about your friend. My cousin is dying of cancer right now and she doesn't "believe in" non-conventional medicine, so she won't try GcMAF. And who knows, it might not work on her anyway. Sigh. In the end I guess we can only save ourselves.

    Forebearance
    (I've got to get myself one of those cute avatars.)
     
  16. Daffodil

    Daffodil Senior Member

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    forebarance..very sorry to hear about your cousin :-/
     
  17. lerae

    lerae

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    Thank you for the advice. I too am sorry you lost your cousin. Does anyone know someone taking gcmaf for cancer, and if so, how did they do?
    I am taking very small doses. i was only taking .08ml. I thought I read that a certain amount does have to be
    taken or else it looses its efficacy.

    Do you just keep taking it while these symptoms are going on in your body?
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    [quote="lerae, post: 267184, member: 4849...
    I am taking very small doses. i was only taking .08ml. I thought I read that a certain amount does have to be
    taken or else it looses its efficacy.
    [/quote]

    That is a moderate dose, I believe--it is the nannograms that count not the mls. I think that would be about 25 ngs from the company you mentioned. You can take a much lower dose and still have plenty of effect.

    Sushi
     
  19. Forebearance

    Forebearance Senior Member

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    Thank you, Daffodil.
    GcMAF seems to look different to cancer patients than it does to us. They have so much conventional medicine, and they want to try it all first before even considering something as far out as GcMAF, apparently.
    But as someone who is aware of it and is trying it, I can't help wondering if it is going to be the next big thing some day.

    Thank you, Lerae. I wouldn't recommend taking GcMAF while you are having that bad a reaction to it. That doesn't sound good for you. I don't know if you would believe me, but I seriously only take 1/100th of the "standard" dose and it works just fine on me. People do vary a lot in how sensitive they are to things. And how inflamed they are when they start GcMAF.

    I hope you can find a dose that works for you!
    Forebearance
     
  20. lerae

    lerae

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    I would like to make a new post and ask how many patients who have tested + for Lyme are using GcMaf?
    Although we tend to have so many of the same biological symptoms on a cellular level...the big elephant in the room is that we are, or rather I am CDC + for the lyme spirochete. Although we all say...take anti-inflammatories such as curcumin, resveratol, etc.... which did not work for me. (actually boswelia worked tremendously for me). and I do not seem to have a methylations problem per tests. although again, your sophisticated topics are beyond me lately..andI am in the medical field. now I chose to be tought vs research myself. So, can anyone tell me why we are reacting so poorly from gcmaf? and if a low dose does not do the intended...then everyone saying..try a lower dose should be careful. (& i am taking it like .06ml...which is lower than 25ng's). Is everyone who is taking Gcmaf under an MD's supervision? and these people who are taking it 3 x's a week? is that MD recommended? I am still frustrated that my last MD so casually ordered this.

    Can anyone explain (which I am again, sure it's been covered), how it can harm you on a cellular level? with the reactions i have gotten, which are pretty horrible, I do not see how this cannot be harming your body somehow. And it is not like the flu...which as we know is a good thing, as it stimulates the immune system. It is almost like an allergic reaction. Or are you all stumped as well? What have your MD's told you would shift the th2 back to th1 and turn the cytokines we are producing off. taking all these natural supplements are good but they are masking symptoms, not thecause. by the way, I am also taking nexavir. And is anyone (besides sushi :) ) taking that as well? In all the studies it helped patients w/i a 50 day period. i have been taking it for 3 months. noticed slight increase in energy. but as soon as i get off....revert back. i mean, are these little gains, that once stopped, go back to 10% vs. 15% even worth it? i wuld love to hear more success stories. I think I read one but cannot remember. Could we start a thread about cfids success stories and their protocols? mabe there is one? thanks! ;)
     

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